Let’s imagine that all diseases known to man belong to a loving, personified, disease family, The Diseases. And at the Annual Disease Family Reunion, each clan of the Disease Family shows up and makes their presence known. Well, except for those who hail from the “Invisible” side of the family, such as Lupus Family — gosh, they are just so quiet and unassuming!
And then it gets real awkward when the problem child no one really wants to hear about is said to be lurking around. The miscreant no one seems to see, for some reason, can leave one feeling attacked by a maniac with a baseball bat. He is said to hide in the shadows for when you least expect it. Some have seen his face, while others claim he is just a myth, a made-up Disease. Suddenly, the elusive dreaded culprit, the pain-bearing phantom, strikes again.
“Help me! I am under attack and in desperate pain!” I say.
“Well, what is it?” the others say.
“Please, something is happening, I feel exhausted! Oh, I feel traumatized, shell-shocked, like my nerves and muscles have gone haywire! I feel on fire!”
“But I didn’t see anything…”
This is fibromyalgia. It’s one of those weird, murky, made-up-sounding diseases that frankly, sounds like a bunch of lies wrapped in a desperate search for attention and a pass at laziness, doesn’t it? It doesn’t sound believable, and so no one wants to hear about it, let alone hear you describe it if you have it.
But today, on an intense flare day, I have had enough of my own secrecy. I am hurting, and my own silence adds to that fog which swirls up and around the disease’s name. While the throes of pain seize my body in rhythm with my pulse, unable to move, my feet up, I brush the computer’s keys to tell you what I need you to know about my fibromyalgia.
My seven secret symptoms of fibromyalgia:
1. There is a beehive in each knee. Or I imagine so. My lower body feels a brutal and busy buzzing inside, as if a thousand metal bees have gone loose and are swarming around my nerve pathways of my legs, between the metal beehives of the knees, down to each foot, which feel dense and heavy, like those old-fashioned metal bombs, weighing me down. And these bombs have gone off. Oh yeah, and my bones were made of glass, which someone unkindly smashed with a baseball bat. So I’ve got all this sharp shattered glass rattling around in each leg, hazardously encased in what feels like hot swollen balloons of skin that feel so tight I wish they could burst.
2. Chronic pain means it is constant; it is always there. I still feel the hurt even when I am not saying anything about it, or even when I’m focused on something else. Yes, even when I’m smiling or laughing. My doctor, a rheumatology specialist, told me to accept that the pain will always be there. And I cried. And he said he was sorry, that we could try this treatment and that (which we did end up trying, each to no avail), but at one point, there was nothing he could do. And I cried some more. And he apologized again.
3. There are days it hurts to put shoes on.
4. Everyone I meet who doesn’t have fibromyalgia has a solution for me to try (and although they mean well, I find it very insulting). They even try to talk me out of it, or tell me it is all in my mind, followed by other well-meaning insensitivities you can imagine. I would rather have someone truly hold space for me when I trust to share in my pain. It feels so invalidating to explain that I have already sought and tried many solutions, including their suggestions, and that my pain is legitimate and accurate.
5. Sleep/bedtime/rest/active rest is a holy and sacred thing.
6. Therefore, it takes all my willpower, and a long time of post-sleep rest, to begin each day.
7. When I tell you I have fibromyalgia, I do not expect you to believe it.
Despite its stigma as a laughable, fake, convenient disease everyone wishes they had, fibromyalgia is very real, and the chronic pain affects me deeply in ways physical, mental and emotional. Today’s flare will pass and tomorrow I will go back to the regular pain buzzing in my knees. And thankfully, now we can all lovingly recognize and welcome little Fibromyalgia as that weird, invisible cousin at The Disease Family Reunion, without the stigmas of mist and shame, but with clarity and pride:
“And how’s that little, uh-Fibromyalgia….Doing OK?”
“Oh yes, better than ever, thanks!”
Guests at the Disease Family Reunion sip their spritzers and see from across the lawn that little Fibromyalgia has proudly smashed the family china with a baseball bat. They’re still unable to see him, but now everyone can smile, enlightened and well-informed that all is as it should be, and that little Fibromyalgia does indeed belong..